Update on Baby Boy: Week 27

(Right now, I have an 18-month-old tugging on my arm and asking for a snack. Some weeks are proving to be harder than others to get a blog post written and posted.)

We wait...and pray...and wait...and pray.
It seems like this is all we ever do these days.
Some days are more harrowing than others.

However, this last week's visit to Tupelo was the most encouraging visit we've made to a doctor in several weeks. Not because of any miraculous grandiose news, but because of the prayers of people. God's presence and peace were very near when we entered what I've now affectionately deemed the Dark Dungeon of Despair (aka the sonogram room). We felt Him there.

About Joel

• He's still stable. There have been no real changes in fluid over the last two weeks.
• His heartbeat was a solid 154. Praise God.
• He was wiggling and moving like crazy—still in the breach position.
• By this point, the doc said Hydrops babies start to develop abnormalities in their brain and heart dopplers plus blood flow through the umbilical cord. All of these things are functioning completely normal for Joel. Again, PRAISE GOD.
• Joel is starting to practice breathing on his own! The ultrasound tech said she usually doesn't see this until around 29 weeks, but there he was. Every now and then, his little diaphragm would rise and fall. Our little fighter is already working to strengthen those lungs so he can breathe on his own.
• Obviously working alongside the opinions of specialists in Jackson, Dr. Brewer is now highly recommending we push even further than 32 weeks of pregnancy if Joel is still looking stable and all vitals are normal. This will medically increase his chances of survival outside the womb.

Dr. Brewer repeated his lovely sentiments to us: "I still can't believe I'm seeing you back here again this week. Everything looks normal except the fluid. His dopplers are normal. His blood flow is on track. His heartbeat is strong. It's both perplexing and encouraging."

And then Nathan went off on him (in the kindest way, of course).

He told Dr. Brewer that this is a miracle in and of itself—that we'd been praying Joel would be a Mighty Man of God, that God would give him a strong heartbeat, that this is no surprise to us because God has answered our prayers over the last 7 weeks.

And I just let him preach. The gospel is oozing out of my sweet husband right now.

What We're Learning

Lesson #1

Last April, we had a miscarriage at 7 weeks. It was definitely hard. But that, combined with this, has made both of us realize the frailty and brevity of life. It's made us aware of our own weakness as human beings and our intense need for a God who is strong and sovereign and fights for us.

Teach us to realize the brevity of life, so that we may grow in wisdom.
—Psalm 90:12

Lord, remind me how brief my time on earth will be.
Remind me that my days are numbered—how fleeting my life is.
You have made my life no longer than the width of my hand.
My entire lifetime is just a moment to you; at best, each of us is but a breath.
We're merely moving shadows, and all our busy rushing ends in nothing.
We heap up wealth, not knowing who will spend it.
And so, Lord, where do I put my hope?
My only hope is in you.
—Psalm 39:4-7

We're learning not to lay our hope in tomorrow or next week or at 32 weeks of pregnancy, but instead to live right this very moment. It doesn't mean we don't continue to ask God to work a miracle in Joel's life in the days to come, but our daily bread has never been more real to us.

Lesson #2

Speaking of our daily bread, the other day, Nathan mentioned the Old Testament story of God raining down manna (literal translation = "What is it?") from heaven for the Israelites to eat while they wandered in the wilderness. God only gave them what they needed for that day. Any extras they tried to keep until the next day had gone bad, filled with maggots and emitting a putrid stench.

Some gathered a lot, some only a little. But when they measured it out, everyone had just enough. Those who gathered a lot had nothing left over, and those who gathered only a little had enough. Each family had just what it needed.
—Exodus 16:17-18

We're learning that Jesus gives us exactly we need for today—nothing more, nothing less. His grace is sufficient. Nathan said it best a few days ago: "No one is guaranteed even the next five minutes, so let's remember to thank God for every single day for His blessings and for the last 27 weeks He's given us with Joel. They've been a gift to us from Him."

Lesson #3

I think it's been so easy—especially for me—to get discouraged and caught up by the uncertainty of what lies ahead. I play out the scenarios in my head sometimes instead of having faith in God's good, perfect plan and realizing I have absolutely no control over our future. I know—NOT good.

When will Joel be delivered? Will he be OK? How will we handle it?
Will he have to live with a debilitating illness or disease for the rest of his life?
What will the next two months look like for us?
Will Madelyn be OK? Will our family be OK?

Do not be afraid or discouraged, for the Lord will personally go ahead of you. He will be with you; he will neither fail you nor abandon you.
—Deuteronomy 31:8

My former pastor in Nashville once preached a sermon where he explained that God lives outside of time. He's not ruled by the clock or timetable that we live and die by. He can see the grander scale of all things—past, present, and future. He's that sovereign and all-knowing.

That picture may make it seem like He's a million light years away, like He's hands off or uncaring, like what's happened or will happen catches Him by surprise. But that's not true. He's the Creator of all things.

He's actually the One who wrote the BIG story of humankind from beginning to end and He's intricately involved in the very details of our lives—even orchestrating every moment down to the second. When I step back and take a 50,000-foot view of all this, when I understand these things about our great God, it helps me breathe a sigh of relief.

He's got us. He sees us. He knows us. He loves us.

There's been so much grace from the Lord to walk through this day by day. There is certainty when we choose to follow Him and keep our eyes fixed on Him. What we want more than anything is His will, for His bigger plan to unfold, and to join Him in that—even if the circumstances stink.

Prayer

I have to say this: don't be scared of us.

There are some people we've shared our story with who automatically avoid or ignore us—not because they're mean or don't care. In fact, I think they actually do care. But they don't know what to say when we're face-to-face or they don't want to be placed in an awkward conversation.

We get that. We totally do.

Often times, there are no words for this kind of situation—and it can feel awkward. But we appreciate those family and friends who: approach us and ask the deep questions; are willing to listen to the raw, genuine responses from us; and can handle the emotion and tears should they show up.

This week's prayer requests are the same song, second verse. Please continue to pray that God would:

• Completely heal Joel and make him a Mighty Man.
• Reduce the fluid in Joel's neck/head so doctors can get a breathing tube in once he's delivered.
• Give us His overpowering peace and presence at every doctor's visit.
• Give wisdom, compassion, and knowledge to the doctors.
• Place the right doctors around Joel at the time of delivery.
• Protect our family from the lies and fiery darts being shot at us from the enemy.
• Surround Madelyn with His love and grace as we leave her with friends to attend doctors visits. 
• Empower us to make much of His Son, Jesus, throughout this journey.
• Give us the courage to accept His will—no matter what He decides for our sweet Joel.

Update on Baby Boy: Week 26

Sorry I'm late with this week's update. If the first week was like drinking from a fire hydrant, then last Friday was like drinking from Niagara Falls.

First things first. About Joel:

• We had our routine ultrasound. He's still in the same condition—not better or worse.
• His heartbeat is still solid, so they consider him stable.
• You can see a massive pocket of fluid build-up on the left side of his chest cavity that's pushing his tiny lungs and little heart all the way over to the right. He's having to work harder as a result.
• Fluid has leaked down into his arms.
• His ears are nearly unrecognizable because of so much fluid build-up.
• A normal woman's amniotic fluid levels range from 4-25. Mine is still normal, but I'm sitting at 24, so I'm on the high end. (No wonder I look and feel as big as a house.)
• The doctors are most concerned about the fluid surrounding Joel's face and neck. If that swelling doesn't go down, it will be very, very difficult to get a breathing tube in him once he's delivered.
• The plan still stands. Joel will be delivered between 28-32 weeks at the optimal time when doctors determine it's best for his chances of survival.

After the ultrasound, we met with the head neonatologist, Dr. Kosek. Our 2-hour visit with her was what took the most time.

She's kind and considerate and gentle and very maternal herself, about the age of our own mothers. Her job was to fill us in on what would happen once Joel is born—from where the NICU is located to exactly what they'll be doing to help stabilize him right after delivery to where the Chic-Fil-A is in the hospital in case we need dinner. 

Not kidding. She gave us details down to the minute degree.

We weren't expecting that kind of onslaught of information. And even more than that, during the course of our discussion, we were asked to decide things (or at least consider things) no new mom or dad should ever have to make about their newborn. EVER.

I think I've held it together pretty well up until that appointment—despite the despairing head shakes and somber faces and dark, dreary atmosphere. But it got way too real for me in that consult. That's why I couldn't bring myself to update you until now.

We left the hospital and the weight of it all hit me. It was literally more than I could physically carry. If I'd been shooting a scene for a movie, there would've been only one take. No cuts. And I probably would've won some sort of Academy award for my performance. It felt—and probably looked—that dramatic.

When we walked into the parking garage, I collapsed onto a bench in front of passersby and wept my eyes out—shoulders heaving, uncontrollable wailing, ugly face kind of crying. Nathan had to help me get it together. We sat there for what seemed like forever before he helped me hobble to the car. 

It was such a HARD day—for both of us.

But now that we've had a few nights to sleep on it, I can't say we're completely back to normal, but at least we've both had time to rest, process things, prepare our hearts and minds for outcomes, and soak in every ounce of encouragement we can from the Spirit.

What We're Learning

Lesson #1

I love the story of Shadrach, Meshach, and Abednego in Daniel 3. I read it again yesterday. I hate that stories like this have often been toned down into simple stories for kids because it's so powerful for any believer. If you've forgotten what happened, go read it here.

When these guys refused to bow down to the gold statue and were sentenced to death in the fiery furnace, they told the king: 

We don't need to defend ourselves before you. If we're thrown into the blazing furnace, the God whom we serve is able to save us. He'll rescue us from your power. But even if he doesn't, we want to make it clear to you...that we'll never serve your gods or worship the gold statue you have set up.

We know God did rescue them. But what I love is their perspective on the Lord when everything pointed south, when there didn't seem to be a way out. They basically said, "Our God can. Our God will. And even if He doesn't, we want to make it clear to you that He's still God." 

That's the kind of perspective we want to have.

Lesson #2

Nathan has been asking God for months to refine him and our family, to make us look more like Jesus. As we were talking the other night, he said, "I think we need to consider this a privilege that God has called us into a deeper walk with Him through this difficult time. We're called to abide in him and expect refinement in the process."

I could've punched him right then and there. What?! A privilege?!

But then, I realized he's absolutely right. God wants us to abide in Him at all times and in all situations—in both good and bad. Check this out:

I am the true grapevine, and my Father is the gardener. He cuts off every branch of mine that doesn't produce fruit, and he prunes the branches that do bear fruit so they will produce even more. ... Remain in me, and I will remain in you. ... But if you remain in me and my words remain in you, you may ask for anything you want, and it will be granted! When you produce much fruit, you are my true disciples. This brings great glory to my Father. (John 15:1-8)

The whole passage is deep and I've left out a lot of good stuff (read it here), but my point is this: during the good times, we don't peace out on Jesus and tell him we'll come back and reconnect our branch with his vine when times get hard. It doesn't work that way. 

NO! Branches (us) should always stayed connected to the Vine (Jesus) if we want to live abundantly and produce fruit. And throughout it all, we should expect to be pruned and refined as we abide in him.

Husband is right. Maybe God is pruning us through this process so we can produce more fruit. Pruning is painful. In fact, it hurts like heck. It's never easy. But it's good and needed. And hopefully, we'll look more like him in the end.

Prayer

I can't thank you enough for praying us through so far. We feel the tangible prayers of the saints all over the place—even from saints we've never even met.

Please continue to pray that God would:

• Completely heal Joel, and specifically reduce the swelling in his neck and head so doctors can get a breathing tube in.
• Permeate our lives and every doctor's visit with His presence and peace.
• Give wisdom and compassion to the doctors.
• Reduce the swelling and amniotic fluid build-up in me, so I don't develop Mirror Syndrome.
• Help us make much of Jesus throughout this process in our words and actions.
• See His will done no matter what.

There's Something About That Name

It's Mama! It's Daddy!
Water... Call... Papa... Call... Grammy... Nanna... Bu-berry ("blueberry")... Sit...
Minnie? Elmo? Minnie? 
(dance break)
Toast... Cow... Toes... Brudder ("brother")... Joe ("Joel")... Bee-bo ("belly button")... Bite...  
It's Mama! It's Mia! It's Daddy! 
Cheer ("chair")... Mouth... Duck... Bath... Nose... Lellow ("yellow")... Pino ("piano")... 
Elmo? Water? Elmo? Elmo?
It's Daddy! It's Manny ("Madelyn")! Whoa! Cool! WOW!
Bible... Night Night... Airplane... Ow-side... Walk... Saw ("sock")... Shoe...
Go? Go? Go!

And on and on and on—all.day.long. The above monologue was literally everything that just spewed out of her mouth within a matter of 10 minutes. She just talks and talks and talks. (I wonder where she gets it from.) 😏

I really don't mind it. In fact, I love it—except when I'm trying to talk to someone else and not paying full attention to her. Then she puts her requests/demands on repeat, slapping my arm to make sure I hear her above all else. And the sound escalates: "water. wAtEr. WaTeR. WATER. WATER! WATER!!!"

Today, though, in the midst of the never-ending toddler chatter, when my heart was the heaviest for Baby Joel, when I was praying for the presence of Jesus to be near, when I was asking Him to intervene, He showed up in a way I wasn't expecting.

Since Madelyn was a newborn, I've sang to her while we rocked right before nap time. Along the way, I've peppered in different songs, but always started off with one particular song: "There's Something About That Name." I'm not sure why I picked this one. Maybe it's because I grew up on old hymns and gospel songs.

Today, as we sat down to rock, for the first time ever, she grabbed my face between her chubby little hands and said, "Mama. Ting. Cheezus."

I had no clue what this kid was trying to tell me. But in true Madelyn fashion, she repeated it again and again, "Mama. Ting. Cheezus. Mama. Ting. Cheezus."

Then, the translation hit me: "Mama. Sing. Jesus."

Tears filled my eyes. My heart overflowed. She knew what we both needed in that moment. We needed Jesus. We needed to worship Him through our song. And so, as she laid her head down on my shoulder, I sang:

Jesus, Jesus, Jesus

There's just something about that name

Master, Savior, Jesus

Like the fragrance after the rain

Jesus, Jesus, Jesus

Let all heaven and earth proclaim

Kings and kingdoms will all pass away

But there's something about that name

Who knew that Jesus could use my little 18-month-old to minister to my heart in such a profound way today? And it must have touched our sweet Joel too—because as soon as I started in on the first note, he began kicking away.

Thank you, Jesus, for my little chatterbox.

Update on Baby Boy: Week 25

I've got a rubber hair band on my wrist right now. As I type this, I'll stop after every few words to pull on the elastic and watch it pop back into place.

Flexible—just like this rubber band. That's what we have to be right now because the schedule has been switched up once again. Instead of going to Jackson each week, we'll be flip-flopping every other week with Jackson.

Next week, Dr. Morris in Jackson. 
The next week, Dr. Brewer in Tupelo. 
The next week, Dr. Morris in Jackson. 
And so on and so on until Joel is delivered.

Yesterday, we saw Dr. Brewer in Tupelo.

Once again, they scanned Joel to find out where he stands:

• Stable. 
• Good heartbeat. 
• Moving around. 
• Larger placenta than normal (typical with Hydrops babies).
• Possible skin edema on lower extremities now (but nothing of huge concern).

Our biggest concern right now is extending the pregnancy as long as possible. We're praying Joel will make it to a delivery at 32 weeks or beyond. We need him to mature in the womb a bit more.

We also got all microarray genetic tests back. Normal. All of them. This, of course, has left everyone as stumped as ever. That means we've come to the end of the road as far as testing. There's no known cause in the genetics or infectious disease arena as to why Joel has Hydrops.

During our visit, Dr. Brewer said: "I'll be honest, I'm really surprised to see you guys here again. This baby has such a severe case of Hydrops that I didn't think he'd make it this long. But he's a fighter."

He sure is, Dr. Brewer. And we thank God constantly for it. 

It's been a rough week for me personally. I can't pretend that I'm always living on a mountaintop of faith and positivity through this. It doesn't mean I don't hope and trust. But it does mean I'm human. It means there are days when the sadness is overwhelming and my weak heart bleeds for my son.

Recently, I've been asking God all the hard questions. We've also simultaneously been reading through a 40-day devotional on the miracles of Jesus. Inevitably, every time I start in with the what-ifs and doubts, He responds through His Word.

Two nights ago, it was:
Why our baby?
Did we do something for Joel to deserve this?
Does God see us?
Does he have compassion on us?

That night, I read John 9:1-11.

It's the story of the man who was born blind. As they walked by him, the disciples asked Jesus, "Why was this man born blind? Was it because of his own sins or his parents' sins?"

Jesus said, "It wasn't because of either one of those things! It was so the power of God could be seen in him."

Then, he spit on the ground, made mud with the saliva, rubbed it on the man's eyes, and told him to go and wash in the pool of Siloam. He did and came back healed!

God's response to us: "This hasn't happened because of anything you did or didn't do. It's so my power can be seen in his life."

Then, last night, it was:
Why aren't you answering?
Why the delay in healing our baby boy?
What are you waiting for? 

Sure enough, I read John 11:1-44.

It's the story of when Jesus raised Lazarus from the dead. Lazarus was very sick and his sisters sent word to Jesus.

He responded, "Lazarus's sickness will not end in death. No, it happened for the glory of God so that the Son of God will receive glory from this."

Jesus waited around and didn't show up until Lazarus had already been in grave for FOUR days. He had compassion when he saw all those who were mourning the loss of his life. In an instant, he called him out of the grave and back to life.

God's response to us: "I hear you. I have compassion on Joel. This has happened for My glory. Everything in My time."

We get it, Lord. We hear you. Loud and clear. We trust. We believe, but help us in our unbelief.

Please continue to pray that God will remove the fluid around Joel's lungs, heart, scalp, and neck. To God be the glory—great things He has done and great things He will do.

The God of Miracles

This song has been playing on repeat in our house. Thanks to a family friend and my former worship leader in Nashville for recommending it as we seek God's face during this time.


The One who made the blind to see
is moving here in front of me, 
moving here in front of me

The One who made the deaf to hear
is silencing my every fear,
silencing my every fear

I believe in You,
I believe in You
You're the God of miracles

The One who does impossible
is reaching out to make me whole,
reaching out to make me whole

The One who put death in its place
His life is flowing through my veins,
His life is flowing through my veins

I believe in You,
I believe in You
You're the God of miracles

The God who was and is to come
the power of the Risen One
The God who brings the dead to life
You're the God of miracles!
You're the God of miracles!

I believe in You,
I believe in You,
You're the God of miracles